“Our study demonstrates the high sensitivity of [gallium Ga-68 dotatate] in the localization of [ectopic Cushing’s syndrome], for both occult primary tumors and metastatic lesions,” the researchers wrote. “Importantly, the use of [gallium Ga-68 dotatate] impacted clinical management in 64% of patients with [ectopic Cushing’s syndrome] overall.” The researche […]

The 11th annual Pituitary Day will take place on October 19, 2019 Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.

Cynthia is from Ruckersville, VA. She is testing for Cushing's due to many symptoms. tested for CD because after exhaustive research on AVN (Avascular Necrosis) related to other diseases. I have four known areas of AVN & after seeing the symptoms of CD, I realized may have this. I also have numerous other diseases Lupus, Sojgrens, Hypothyroid, High […]

Today is the Thirteenth Anniversary of my kidney cancer surgery. These thirteen years have been bonus years for me. For my cancer stage, the 5-year survival rate was 81% and I’ve made it more than twice that long – so far.

Kathy was diagnosed with a pituitary tumor in 1991. At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014. Melinda was a member of the Cushing’s Help message boards since Jun 24, 2007. She was only 25 and left behind a young son and many loving family members.

He died of a presumed heart attack. September 19, 2015 he said "'I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I'll have to consult my doc and see if this may also be an issue."

'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and sh […]

Before any crisis occures, contact the local ambulance service that would come to your home and/or work and find out if they have a protocol to treat you. My ambulance service could not give me the shot I needed even tho I not only had a medic alert bracelet, but a file of life on my refridgerator with physician instructions etc.

After my advent, we had to bring it to the governing body’s attention for change, and now ambulance personel are approved to use information like the file of life or the Medic Alert bracelet to treat anyone with not only in Adrinal crisis but anyone with documented medical information.

You could help a lot of other people besides yourself. You may need the help of your physican.

I have quite a few brown “age spots” on my face, I accidentally discovered a way to camouflage them when I got a sample of Vaseline Healthy Body Glow. It “tans” your skin. In my case it made the skin dark enough to match the brown spots so they don’t show up as much.

I’ve noticed that there are now lots of similar products on the market and I’m sure that they will all work as well.

Question: Will the glucosamine/chondroitin that supposedly helps arthritis help with the pain and stiffness of steroid withdrawal? Is there any harm in trying it?

Answer: Glucosamine and chondroitin are chemical components of cartilage, tendons, ligaments, and other connective tissues that form the joints and muscle attachments. Some people with arthritic joint pain appear to benefit from taking these chemicals as dietary supplements (supplements because they are in a normal diet that contains meat). I am unaware of any report of their effect on the musculoskeletal symptoms of steroid withdrawal. However, I see no reason to anticipate any more risk for their use in this setting than in any other.

Spinach. A Mediterranean favorite since the 16th century, spinach is a rich source of vitamin A (for cardiovascular health) and vitamin K (for bone health).

Apricots. The true fruits of spring, apricots were first discovered in China and have been cultivated for more than 3,000 to 4,000 years. They are also rich with beta-carotene and lycopene, two carotenoids important in reducing the artery-clogging LDL cholesterol and maintain a healthy heart.

Spring onions. Onions have been the subject of new research linking them to lower incidence of certain cancers. They also provide vitamins A and C, calcium and iron.

Green peas. Green peas are a rich source of folate and a wide range of B vitamins, essential for the proper metabolism of fats, proteins and carbohydrates.

Basil. A popular herb that can enhance the flavors of your favorite pasta sauce or spring salad, basil is a wonderful source of vitamin A.

Avocados. Previously avoided by dieters due to their high fat content, avocados have made a comeback as a great source of heart-healthy monounsaturated fats to help lower cholesterol. By volume, avocados are also 50 percent higher in potassium than bananas.

Spring greens. Choose from arugula, romaine, mesclun, bok choy and watercress to mustard, collard and dandelion greens. All are rich in lutein, beta-carotene, vitamin C, folate, minerals and fiber and excellent for digestion.

Question: While my cortisol levels are still high, is there anything I can do with my diet or exercise to keep my weight from increasing and loosing more strength? Is protein intake important?

Answer: With excessive cortisol levels, diet and exercise are important to keep from gaining weight and losing more muscle strength. A nutritious diet with a multivitamin supplement is recommended, usually the diet should not exceed 1000 to 1200 calories per day. It is important that the balanced diet contain adequate protein, however excessive protein intake probably will not make much difference in muscle strength since excessive cortisol causes protein (muscle) breakdown. Since patients are usually treated soon after diagnosis, no studies have evaluated the effect of a high protein diet.

Regarding exercise, the best type of exercise is that which is not stressful to the skeletal system. For example, swimming and bicycle riding are good exercises. Jogging and lifting weights are probably not a good idea since this does place stress on the skeleton (bones). Additionally, a calcium supplement is important. The recommended amount of approximately 1500 mg of elemental calcium per day can be achieved by taking 4 Tums Ultra or 3 tablets OsCal 500.

I choose to just eat salt like it’s a candy. I have a little container of plain sea salt (you don’t want the iodized stuff) and I lick my finger and just dip it! Gross I know… but it’s cured many a headache. My sodium remains low… but it never ceases to amaze me how salt will taste good, and then just stop tasting good. That’s how i know I’ve had enough.

Question: My Cushing’s has been cured for about 3 years, but my muscle strength is still not like it used to be. I work out at a gym regularly, but is there anything else that I can do to try and recover my strength?

Answer: Deterioration of muscle function is a common consequence of Cushing’s syndrome. The majority of patients recover full muscle strength and performance after cure of their Cushing’s syndrome. Physical therapy and a high protein diet have both been shown to improve muscle strength in patients with steroid-induced muscle damage. After cure, most patients recover normal muscle strength within 1-2 years.

Question: A really big problem for me (and seems like a lot of people) is the muscle weakness and fatigue. Does anyone have any tricks that work for them?

Answer: One thing that has helped me is eating more salt. Of course if your blood pressure is really high already, you shouldn’t do this. But mine runs pretty low and I have a hard time keeping my liquids….I am in the bathroom constantly. This is something Dr. F recommended after finding that I have low aldosterone and renin. Also, I am taking vitamins and iron. It seems to help sometimes and sometimes I am as fatigued as can be, but I figure it can’t hurt. Hope this helps!

Answer: If you are cyclical, it is SUPER important to chart. Part of the problem is that for some folks a Low symptom is another person’s High. After awhile you should be able to see a pattern showing itself.

And yes, when I’m low like that, I did eat salt out of the shaker (I even have 5 different flavored salts, I know, i’m a whacko!)

But when I’m in a Low, I haven’t found a way to pop out of it, or force a High. It’s something I’m working on though.

….If I eat lots of pasta or bread, I have lots of muscle aches and pains. A big bowl of mac’n’cheese will make me feel like I’m having a fibro flair most days

Answer: You’re right. I choose to just eat salt like it’s a candy. I have a little container of plain sea salt (you don’t want the iodized stuff) and I lick my finger and just dip it! Gross I know… but it’s cured many a headache. My sodium remains low… but it never ceases to amaze me how salt will taste good, and then just stop tasting good. That’s how i know I’ve had enough.

Question: I have osteoporosis due to Cushing’s. Will this improve over time?

Answer: A recent study has shown substantial improvements in bone density within several years after the successful cure of patients with pituitary Cushing’s. Bones have the best possible chance for recovery when the replacement steroid dosage is as low as possible. If you are on replacement therapy following surgery, you should be working with your doctor to taper the steroid dose at a rapid , but tolerable rate.

Bones can also benefit from a healthy diet and intake of at least 1 gram of calcium per day. Exercise has also been shown to be beneficial, but is best started under the supervision of a physician. Most patients with osteoporosis can undertake exercise such as walking or swimming without risk of injury. Exercise that is weight bearing, such as weight lifting, or exercise that involves a risk of falling, such as skiing, would not be advisable unless under the direction of a physician or physical therapist.

Question: Following surgery for Cushing’s, I have had a lot of swelling in my hands, feet and face. Is there anything that can be done to help this problem and is it anything to be concerned about?

Answer: Swelling, or edema, may often accompany Cushing’s syndrome. Following surgical treatment of Cushing’s, some patients will continue to experience edema for some time following the surgery. This may be related to the frequent need for steroid therapy following curative surgery. This is really nothing serious, but can be uncomfortable. I usually treat patients with a water pill or decrease the dose of steroids.

What pointed me in the cushing’s disease direction were the symptoms such as buffalo hump; hair growth on specific areas; weight gain around my neck, face, abdomen, chest and back; my pituitary adenoma and the last results from my test that showed high levels of cortisol.

It is absolutely critical for your physical and emotional health for you to have a doctor with expertise and experience with Cushing’s! Inexperienced doctors all too often misdiagnose, insult and frustrate, preventing prompt and proper diagnosis. Misdiagnosis can be lethal!

Obviously, it is also crucial for you to have a surgeon with experience in order to minimize the likelihood of errors that can lead to complications or death. Wouldn’t you prefer someone who performs the surgery 5 days per week over someone who may have done it a total of 5 times in his or her career?

On the other hand, doctors with experience are most likely to be more thorough and precise in recommending and offering the proper tests and treatments, and more aware of the subtle nuances and possible complications of the syndrome, learning from each Cushing’s patient s/he treats, to the benefit of others.

Investigate your insurance, and if necessary (and possible), change your coverage in order to be able to afford to go to doctors who are Cushing’s experts. Because Cushing’s is often caused by a tumor, some insurance (including United Health Care) covers Cushing’s related medical expenses including travel to facilities they consider “cancer centers for excellence” if you need to travel over 100 miles to these experts. United Health Care covers medical expenses with no co-pay, including travel, lodging and meals for myself and a travel companion so that I am able to afford the best medical care possible from doctors who are experienced with Cushing’s.

~ Judi

The most important advice I have to give is this:

1) GO TO A TEACHING/RESEARCH HOSPITAL!!!

2) If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.

3) IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;

• the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).

• I use stevia instead of sugar because its natural (health food aisle.)

• alcohol really hurts now, so only a little wine occassionally.

• lots of yogurts.

• every couple days a mixture of senna laxative and stool softener (not too often)

Question: Since having Cushing’s, my sex drive is next to nothing. Is this common, will this problem remain forever or get better? Is there anything that can help?

Answer: A decrease in libido or sex drive is common in patients with Cushing’s. Several factors influence a person’s sex drive.

In women, regular menstrual periods or adequate estrogen and progesterone replacement is important.

In men, if the testosterone level is low, this indicates the need for testosterone replacement. In pituitary dependent Cushing’s, once the normal pituitary gland has recovered, the adrenal glands should be producing an adequate amount of both cortisol and male hormones (important in women for sex drive).

If a woman has had 1 adrenal gland removed, the other adrenal should make an adequate amount of male hormones once the entire pituitary adrenal axis has recovered (this may take several months as well). In the situation of bilateral adrenalectomy, there is loss of adrenal male hormone production. If the ovaries are functioning normally, male hormones are also produced and this should provide an adequate amount for normal libido.

If a woman does not have normal menstrual function and requires estrogen and progesterone replacement, sometimes a small dose of testosterone is added to improve libido. A common preparation is Estratest.

Question: Since having Cushing’s, my sex drive is next to nothing. Is this common, will this problem remain forever or get better? Is there anything that can help?

Answer: A decrease in libido or sex drive is common in patients with Cushing’s. Several factors influence a person’s sex drive.

In women, regular menstrual periods or adequate estrogen and progesterone replacement is important.

In men, if the testosterone level is low, this indicates the need for testosterone replacement. In pituitary dependent Cushing’s, once the normal pituitary gland has recovered, the adrenal glands should be producing an adequate amount of both cortisol and male hormones (important in women for sex drive).

If a woman has had 1 adrenal gland removed, the other adrenal should make an adequate amount of male hormones once the entire pituitary adrenal axis has recovered (this may take several months as well). In the situation of bilateral adrenalectomy, there is loss of adrenal male hormone production. If the ovaries are functioning normally, male hormones are also produced and this should provide an adequate amount for normal libido.

If a woman does not have normal menstrual function and requires estrogen and progesterone replacement, sometimes a small dose of testosterone is added to improve libido. A common preparation is Estratest.